(latest updates are at the bottom)
January 7th 2007 - Hospital Update
January 8th 2007 - Hospital Good News
|TUESDAY, FEBRUARY 06, 2007 08:17 AM, CST|
Email that was sent to update therapists on 2-6-07
I'm sending this to ALL of Ally's wonderful therapists, nurses, main doctors, EI and DSCC so you are all a bit updated.
Ally (knock on wood) is doing overall VERY well again with her respiratory health and her movement. Depending on the day, she is sitting in her Tumble Form for 30-120 minutes and is doing very well attempting her switch toys. She is also talking/singing up a storm.
This month, we went to Rehab Institute of Chicago (recommended by Dr. Gaebler) to see the OT, speech and engineer for augmentive communication and making special adaptive things for Ally (slings/slant desk...). They are wonderful there and had some great ideas of things to do with Ally. Let me or them know if you need a report of their evaluation and goals. I just realized that I think it was only sent to me and Dr. Gaebler and it is very thorough and great.
Here are some highlights:
1) Ally was lent a microlight switch with a switch latch timer. She operates this very well. She also used a IST (infrared sound touch) switch very well.
2) We also used a MAC button attached to the switch to encourage Ally to tell us when to turn the pages of a book or lift the flaps to see what was underneath.
3) We began to use pictures and symbols to teach Ally how to make choices between things.
4) The engineers are going to design some type of slings for Ally so that she is able to use the bottom half of her arms and hands more. ***I have pictures below of another family's slings for ideas.***
5) They are also going to create some type of slant desk so that Ally can play more easily when she is laying flat and/or on her side.
This were just some of the highlights. I'm sure there is more. Here is the contact information if anyone needs to contact them. I also gave them Kristi, City Kids and JoAnne's information.
Thanks again for being a part of Ally's life and her successes! Please see the pictures below. I may have some additional ones to forward soon.
Thanks for your time,
February 9th 2007 - Beginning of Ally's 5th trip to CA
Just wanted to let everyone know that we made it to CA safely. We had a ton of good luck today and I decided to bring my computer so I could work on it if I was bored or couldn't sleep. It's 3 in the morning and here I am up...
- I called ahead to TSA (airport security) and it went very smoothly again. One of the supervisors meets us at the gate and they walk us through. Ally stays in her stroller laying down with her pulse ox and suction. They barely pat her down and around her stroller.
- All liquids are immediately approved because they are for medical reasons. This is one of the main reasons I call. I can now even bring open water for Ally's machines and g-tube flushing.
- The TSA remembered her from last time and said how much she has grown (her hair mostly) and asked a lot about her. I think it is great to make these connections so things continue to go smoothly.
- United Airlines had all our paperwork with the flight attendants and they even remembered our names without looking down at it. They were VERY friendly and very helpful.
- United did promise that they were able to set up an outlet for Ally's bipap. They attempted, but it did not have power. Luckily we brought our own and it worked completely fine. I come prepared.
- Ally did wonderful on the plane. We put on her bi-pap a tiny bit before take off and left it on the whole time. She slept most of the time and stayed in the 90s the whole time (except for one quick dip in the 80s since she wanted to be suctioned). We bring a pillow and she lays across mine or Billy's lap.
- We ended up with an extra seat since the lady who was seated with us quickly and nicely volunteered to move anywhere to make it more convenient for us.
- We rent through Dollar and have the Express membership, so that went really fast and we were on our way.
- We are trying a new hotel in CA, the Best Western. We are very impressed with the cleanliness, spaciousness and nice staff.
- Later today is Ally's appointment. She will give blood, see Dr. Wang just for a simple exam, and get her new clinical drug rx. She goes up a dose this time to Level 4 in the Double Blind placebo stage. We start the Open Label (drug for sure) in May. We think there is a very good chance that Ally is getting the real drug now though.
- Only one mishap today! I decided to try to pack some beverages and food in our checked baggage for the hotel. Of course, I needed to have some bad luck and a can (OF BEER) some how opened up or was actually sliced kinda. Most of our clothes were wet, but I don't even care. The day went so well, we can wear the same thing or pick something up at Target today.
Hope everyone else starts their weekend as well as we did,
February 9th 2007 - Ally's 5th trip to CA - after appointment
Just a quick update, before I maybe go to bed. I already had a little nap, so I'm unsure how my night will go. Believe it or not, Allyson is still sleeping through almost all nights (knock on wood), but it's me that can't sleep most of the time.
Ally had a GREAT appointment. God is really watching down and I think he/she knows that I needed things to go smoothly after the h*ll I have been dealing with in Chicago and with her pneumonia.
* They drew blood with NO problems at all. They only needed to look at one arm and we were in and out within 5-10 minutes. No need to ambu bag or use the cough assist, like I usually need to do when she gives blood (every 2 weeks for the 1st part of the clinical trial).
* They quickly let us go straight into the room before giving blood. I told them that I was worried about all the germs and they understood! Wow, they understood!
* Ally (with her clothes on) weighed 14 lbs and 7 ozs. This is the most she has ever weighed!!! I've been giving her a bit extra food and watching her closely and it seems to be working. I'm not sure what my goal weight is for an SMA 1 Child at 1 years old. Any thoughts?
* Dr. Wang was wonderful as usual!!! We talked all about the paper/project that he just submitted on Quality of Care for SMA children. He hopes it will be published soon and then all doctors will be able to see in writing that there IS hope for SMA children.
* He is VERY willing to travel to Chicago to talk about SMA and quality of care. He also talked about him, Dr. Schroth and Dr. Swoboda setting up more trials in multiple sites for Type 1s.
* He was very impressed with how well Ally is doing. She is lifting her elbow to her face, starting to hold her knees up and moving her legs a pretty lot. This is great for so early on in the trial.
* We didn't need to do the Muscle test this time, but we will in March. I'm hoping to maybe have a family member or friend come with me to CA, so Billy can work. Any takers? It will be for 3 days, probably around March 13-16th.
* Billy and I had a wonderful lunch/dinner at Olive Garden. We haven't been to a restaurant in a couple of months. It was pretty enjoyable with only a little suctioning and Ally slept a little.
* We even got to shop at Walmart to replace some of our beer drenched clothes. I got a couple of things for the girls too.
* Just finished my chocolate, cheesecake dessert! I'm not sure when my diet will ever start, but I'm not going to stress myself. I actually wore jeans instead of sweats this week.
*Our flight home tomorrow is at 1pm, so hopefully things will continue to go smoothly. Thank you god and thank you everyone for your prayers and well blessings.
PS - Did I forget to mention that it is 60 degrees F in California? It's a bit rainy, but off and on. I was hot with a sweatshirt. Maybe we should stay instead of going home? No, I need to get back to my other two angel girls.
I'm uploading some of the emails I previously wrote about Ally, so I figured I should write a little more since I constantly get behind.
Ally is still doing well with her respiratory status and her feedings have gotten much better too. We have mostly stayed inside for the last month except to go to her Fundraiser/Birthday and our CA trip. It's just not worth taking her out in the frigid, cold, winter weather that we are experiencing in Chicago. I even picked up her 1 year old and RSV shots so the nurses could give them at home.
Ally had a great Valentines Day and all the girls got a ton of cards from other SMA families. She has recently tried chewing on a Twizzler and has enjoyed licking on a lollipop. I think ice cream is her favorite though. She only gets very small amounts, but it's great stimulation for her mouth. She has been talking, or attempting to talk, a ton. It's so cute to hear her.
She spends a large portion of her day watching videos. I try to pick somewhat educational ones. Her favorites are Jay Jay the Jet Plane, Teletubbies, Barney, Little Bear and Baby Singing Times. Baby Signing Times is really neat since it shows toddlers signing and there's a ton of music. Melissa has been trying to read Ally the books that go along with the dvds. Ally just smiles really big when her sisters interact with her.
Kristyn went to a Sib Sensation class on Saturday and wrote a great story about Ally and how she feels. She is also an amazing sister. Billy and I are very blessed to have 3 great daughters.